OP0303-PARE HEALTH DEMOCRACY IN THE TIME OF COVID-19: A COLLABORATIVE INITIATIVE BETWEEN PATIENT ORGANIZATIONS AND HEALTHCARE PROFESSIONALS TO SUPPORT PEOPLE LIVING WITH RHEUMATOID ARTHRITIS
Authors: S. Tropé, R. M. Flipo
Journal: Annals of the Rheumatic Diseases (2022)

Background Has the COVID-19 crisis overwhelmed health democracy? This question may have arisen since extraordinary measures taken in response to the pandemic were developed almost exclusively by scientific expert committees. Citizens, patients, patient organizations, healthcare professionals, and even experts from these committees have recognized a lack of health democracy in the decision-making process regarding the COVID-19 response in France. Indeed, patient voices were barely heard during the early stages of the pandemic; yet inclusive dialogue is crucial for building trust and adherence to policy. Moreover, patients also need to be assisted in handling the overabundance of COVID-19 information, particularly misleading and false information, referred to as an “infodemic” by the WHO. Objectives To show a practical and effective application of health democracy in rheumatology through collaboration between patient associations and rheumatologists during the COVID-19 pandemic. To collect, select, analyze, abstract, and translate COVID-19 literature to provide rheumatoid arthritis (RA) patients with useful, convenient and quality educational materials that answer patients’ medical, scientific and daily life questions. This initiative is consistent with patient-centered COVID-19 response. Methods At the instigation of a patient association in October 2021, a working group was established to develop a COVID-19 patient education resource to meet the expectations and needs of RA patients. The working group consisted of health professionals and patients identified by the partner patient organization. A committee of rheumatologists checked the reliability and accuracy of the scientific and medical information. A committee of patients assessed materials’ relevance, readability, and understandability. Materials were written in lay language without distorting the meaning of the scientific data. The methodology is detailed in Figure 1. Figure 1. Process flowchart Results The document is available to download on www.polyarthrite-andar.com (number of unique visits on the webpage for the last version: 1176). A printed version was also provided directly to patients by rheumatologists. To provide up-to-date information, the brochure was updated 7 times between the first edition in January 2021 and the last version in August 2021. This last version included 49 questions. Each update was announced to all members of the patient organization in its monthly newsletter (number of newsletter’s subscribers: 1863; number of followers: Facebook=2632; Twitter=1382; Instagram=921; LinkedIn= 590; Youtube=2907). The “Medical and scientific questions” section provided reliable and expert-reviewed information about the virus, protective measures, testing, vaccination, integrating RA specificities and its treatments for each item. The “Daily life questions” section provided practical advice during the pandemic, in particular by addressing the “TousAntiCovid” smartphone application, isolation certificates, remote working and lockdown instructions. Conclusion This initiative demonstrates the benefits that can be achieved by greater collaboration between patients and healthcare professionals to address population health problems. The patient could be an active contributor in improving disease management of his peers. This patient education tool is a good example of the relevance of the motto of ‘nothing about us, without us’. The COVID-19 pandemic has highlighted the importance of bringing patients’ voices to affect evidence-based policies centered around the needs of patients. Health democracy needs to form the backbone of how a health system is structured. Acknowledgements I Writing support and update was funded by Galapagos B.V., Mechelen, Belgium Disclosure of Interests None declared